The Shape Of Water - A Schwannoma Diary (#11).

I saw my neurosurgeon last Friday for my 6 week post operative review. It's kinda hard to believe that six weeks have past since my surgery. Time moves in such elastic ways. 

We reviewed my progress. It's been patchy. I'm not moving freely. Even with the physiotherapy exercises I've been doing, it's hard to loosen up. Walking is a chore for the most part and I can't tolerate walking long distances, say more than a kilometer. It's hard to get in and out of my car, my bed or chair. I experience pain at the surgical site and down into my legs, along with long bouts of pins and needles. Incontinence is still an issue but, so far I've avoided any significant accidents. This requires a regular toileting regime, forward planning - especially on outings - and a keen focus on what my body is telling me. I do get strange sensations, which I've attributed to warnings that I need to take heed of.

With the activity I've been maintaining however, I do believe things are improving. At the very least, I'm coping with them. My neurosurgeon prescribed some new medication that will hopefully, address the pain issues and the nerve irritation that is causing the pins and needles.

The one question I had for her during my review last Friday though was pretty much the only thing I wanted to get an answer for.

Can I get back in the pool?

When I had my original surgery back in 1989, my then surgeon was happy to allow me to get in the swimming pool after a similar time frame. As a result of this, not only did I discover a love for swimming, I became really good at it. So I knew going into this surgery that the pool was going to be my Holy Grail. 

My neurosurgeon this time around prohibited me from going swimming until she had reviewed me. Her primary concern was my wound. She wanted to ensure it had healed properly before exposing it to water and risking infection. I accepted this, but I was disappointed that I couldn't start as soon as possible. 

You can imagine how pleased I was when I put the question to her on Friday and received her answer. 

"Absolutely!" 

I felt like I was receiving a Christmas present - all over again.

The Unley Swimming Pool at Forestville here in Adelaide is a pool I've been swimming at on and off for twenty years. It's an Olympic sized pool and it's a friendly place. After dropping the kids off at school, I headed straight there. After 9AM, the early morning lap enthusiasts and competition swimmers tend to taper off so competition for lanes is minimal. I went for the recreation lane today. 

I had an idea of what I was going to do once in the water but for this first session, I winged it a little. I adapted some of my 'on land' exercises to the water and set about constructing a regimen that ended up looking like this; 

Stationary calf stretches 10 reps x 10 seconds right leg.
Stationary calf stretches 10 reps x 10 seconds left leg.
Stationary side stretches 10 reps x 10 seconds right arm (down right leg).
Stationary side stretches 10 reps x 10 seconds left arm (down left leg).
Stationary leg kicking (against side of pool) 2x 1 minute.
Walking (strides) 25m x 10.
Jogging steps 25m x 10.
Side strides 25m x 10.
Breast stroke (gentle!) 100 meters. 
Cool down walk 25m x2. 

I won't go into deep explanations of each of these, but feel free to ask me about them in the comments and I'll try to explain them if you're interested. 

The session took me about 45 minutes. 

Suffice to say, from the moment I entered the water, I felt amazing! Water and buoyancy affords the body so much freedom of movement and I was able to stretch so much more easily than I can on land. The exercises I chose were designed to achieve both a muscle stretch and a nerve stretch through my lower back and legs and I chose to limit them once I could feel them in my calves in particular. I felt that was good indicator. Curiously, I felt the stationary leg kicks and the breast stroke in my right buttock, close to the mid-line. On land, most of the pain I've been feeling has been centered around my left buttock and sciatic nerve. I'm not sure what the significance of that is but I'll bring that up with my physiotherapist when I see him tomorrow.

Leaving the water after that first session, I felt a little shaky - but it was a good shaky. I felt like I had achieved something important and I felt a rush of endorphins - ones that have been in short supply lately. I'm well keen to do it again. But I know I need to pace myself. 

This is a big milestone for me. Since the surgery, I've been looking towards this moment. I've been thinking about it. Planning (loosely) what I would do once I got in there. I knew it would be good...and it was. 

I love the shape of water. 

DFA.

A Moment In The Air - A Schwannoma Diary (#10).

I can't remember how long it's been since I've been to a beach. 

The sun on my face. 

The sand between my toes. 

The sea breeze. 

My dog is just as struck by the beauty of the Adelaide beach on which we sit. I've let him off the lead and he's galloped across the sand, his floppy ears flailing like sails. He's snapped at the air like it's some sort of treat. 

On the beach, I can stretch my legs. I can stride a little bit, even though the pins and needles keep reminding me that they're there. I can accept the pain because where I am feels so bloody good! 

There's a young Dad frollicking with his infant son near the edge of the foam as it races up the sand. The boy squeals with joy and it's hard not to smile. Right now - I get it kid. 

To sit on the sand with a straight back (because I *have* to keep a straight back) and look out over the jetty. To marvel at just how wide open everything is. The sun and the light! The air! The breeze on my face! 

I've been surrounded by the four walls of my house for far too long.

I almost don't care that I move like an 80 year old. That I probably should have taken some pain relief with me. That there's not a toilet close by.

I can see a kiosk nearby. 

You know what? I'm gonna treat myself. Yes I am.

DFA.

The Approaching Storm - A Schwannoma Diary (#9).

See...that's the thing about Schedule 8 analgesics. They're all well and good when you're on them and they are giving a nice little analgesic high. You feel good, existing in a state where you're pain free and can function *almost* normally.

And then the wall rushes up. You slam into it and you realise it was all a fallacy.

No matter how diligent you are in weaning yourself off them, reducing the doses every few days and adjusting, there is always a drop off once the final dose has been taken. And it's a big drop off. I encountered it yesterday when I entered the first day without having the narcoticanalgesics available to me.

The pain in my legs was breath taking. Every step I took was a punishment. And not only was there the pain of impact - from taking a simple step - it was accompanied by a lingering bout of pins and needles, lasting anywhere upto an hour once I'd completed a single instance of walking. An electrical storm in my legs.

Any activity is a war. Finding a comfortable spot in bed or in a chair. Having a shower. Even toileting is a fucking to do.

I'm getting frustrated. I'm getting angry. I'm weeping alot. It takes everything I have to erect a veneer so that no-one sees. I'm a shitty builder.

I am able to get some respite from it with Paracetamol and Ibuprofen taken together. But they aren't all that effective. Everything is hard. Even showering. Even toileting.

We're entering a phase of recovery now that isn't going to be pleasant. I have to ride the wave of withdrawal and hope that this will settle in a few days. I have to be patient when pain and patience are the worst of partners.

I have to rely on myself now and I'm not very reliable.

DFA.

We're Through The Looking Glass Now - A Schwannoma Diary (#7).

It's day 2 post op now. My lines and drains are out and I am existing in a pleasant fog, supplied graciously to me by an assortment of Schedule 8 analgesics and miscellaneous medications. The bulk of the pain I'm experiencing comes courtesy of the 6 inch surgical wound they cut to access my spine as well as a headache that occasionally pounds in the background if I try to do too much. Because the lesion was intradural, I lost the bulk of my cerebro-spinal fluid during the operation. This takes time to replenish - hence the headache.

My legs can move, and I can walk - albeit gingerly - and without much confidence. But I can walk, so that is great relief number one. Since I had my urinary catheter taken out yesterday, I have managed to go to the toilet several times. It takes me a long time to finish but I can empty my bladder. I have control, so that is relief number two. I've yet to test my bowel so I can't report on that one just now. I'm keeping my fingers crossed. The other stuff - the *man* stuff? That will have to wait for the time being. But I would be lying if I said that it wasn't playing on my mind. 

How am I feeling psychologically?

At the moment, I feel drained - completely washed out in fact. I'm struggling to keep my eyes open, even as I write this - and it's mid morning! After, seeing the physio, having a shower, brushing my teeth and submitting to nursing tasks of observations, medications, wound care, I'm pretty much trashed. 

Mostly though, I'm relieved to be on the other side. This "thing" has consumed so much of my mental capacity and well being for so long, there has been no room for just living. I've neglected my kids - all their end of year school achievements and especially their anticipation for Christmas. I didn't go to get the tree like I usually do and a lot of things have happened around me. 

I mean, I've been there - but I haven't been there. 

I've neglected my wife. Emily has been holding fort, running around and trying to keep our household together, whilst tidying up all her loose ends at work, preparing for Christmas and worrying about me. She is a very pragmatic woman, not often given to overt displays of affection. She expresses her love though in her devotion to the household, the family. She often moves in a quiet way and it's easy to miss the things she does. Everything she does is done with love. 

I need to be more aware of that. 

There have been so many wonderful people who have reached out to me these past few days, from all across the world, sending messages of encouragement, love and best wishes. I'm overwhelmed with gratitude for them. 

I hope to be home for Christmas. I have to make it up to my family for all the chaos I have caused them.

I have to stop now. I'm dribbling saliva over my keyboard.

DFA.

Goodnight Marcella - A Schwannoma Diary (#6).

DFA.

State Of Play.

So it's been six weeks.

Six weeks since the surgery that turned my life sideways. I was going to say upside down, but that sorta seems overly dramatic and not altogether justified. 

Or maybe it's just me being uncomfortable with the significance of all of this. 

So where am I at?

I still can't talk with any decent quality. I'm good for a few rasping sentences but I'm stuffed after about an hour a day and then I just can't make it work. Which presents a problem because, before all of this surgery, I committed to an author talk at a suburban library here in Adelaide later this month. I still want to do it so I've been resting my voice as much as is humanly possible and I've been working on my exercises three and four times a day in order to stretch the muscles in my throat because I really want to do it. I feel as though I need to do it. 

(Week 3. Would you wanna kiss this??)

My throat hurts like a mother f***er - all the time. 

I saw my surgeon earlier this week and he passed his camera down into the area where he operated. While it's healing, it's become inflamed and hyper sensitive due to some reflux I've developed. I'm now popping Somac daily (a protein pump inhibitor) to address the reflux and I'm swallowing Gaviscon four times a day. The Gaviscon is a thick cement like liquid - that tastes awful - which coats my throat and protects it against acids my natural desire to actually fucking speak.

It's ironic that the exercises I'm supposed to be doing are actually contributing to all of this. 

Oh - and I think I'm addicted to coedine.

I'm popping Panadiene like a junkie - well it feels that way - even though I'm actually sticking to the requisite recommended dosing of 6 hourly. The pain has localized itself to my throat, in the vicinity of my voice box - what's left of it and it feels like razor blades everytime I so much as swallow my own saliva. You would be amazed just how active the tissues and muscles of the throat are, even when you aren't doing anything. It's nigh on impossible to get any respite from it. And, of course, as all knowledgeable persons would know, Panadiene plays havoc with one's bowels. I am so constipated that I've added several classifications to the Bristol Stool Scale. Our toilet has become the equivalent of a missile testing range when I'm in there. It's hazardous.

I hate eating. 

I don't enjoy food at all right now. Between the pain from my still healing palate and my throat, meals are just a chore. It all tastes like metal and flesh. I approach the act of swallowing solid food with dread so much so that I'm starting to avoid them altogether. 

But it has done wonders for my waist line. I've dropped 5kgs in the past month and I'm still shedding.

Suck on that Michelle Bridges!!

I'm back at work. 

Because I do night duty, I can avoid talking for the most part outside of handover and introductions to my patients. They have been very understanding and have kinda dug having a largely mute ICU Nurse caring for them. My colleagues have been hugely supportive and somehow make it work so that I can work. 

(Walhalla - where I want to set my new novel.)

But I'm sinking into a state of functioning depression. 

I want my life back. Beyond waking and doing what I have to do to make it through each day, I'm not motivated. I am trying to write. I've largely mapped out a new novel but it all feels like a chore right now and I don't enjoy it and that's dangerous for a writer. I don't get out much. I clock watch a lot, waiting for the next time where I can pop some pills or drink some cement to ease my dysfunctional throat. It all weighs heavily on my mental well being. At the moment, life consists of just getting through and I want to do more than just fucking get through...

You know...?

DFA.

Isolation, Silence & Dysfunctional Fandom.

It's been a week since my surgery.

A long, slow, grinding week, characterized by constant pain, an inability to eat anything more substantial than liquids or pureès, an inability to form anything more than a few words that register above a whisper. I've spent long hours looking at the walls, wrestling with the most basic of decisions - (should I pick up that empty toilet roll tube off the floor so that the dog doesn't chew it - or no?)

I took a photo of the visible part of my throat last night. I wasn't sure whether I wanted to see it and I when I did see it I was sure that I didn't - and I wish I hadn't.

It is raw. It is mutilated. It is green! There is so much putrid slough in there that mere sight of it makes me want to gag. If only I could gag.

In short - I am thoroughly sick of myself.

I'll understand if you choose to vague out now because I know my misery can be interpreted as self indulgent. But I will say that blogging about this experience has gone some way in helping me cope with the situation.

And I will say that on Thursday, I had a slight bump in energy and motivation - enough that I took my dog Sam for a walk to the park and let him off to run around for a bit. Adelaide's parklands near my house are a wonderful open space, safe from traffic and just perfect for burning off some canine energy. Sam was, of course, as pleased as punch. The walk ruined me but I was glad I did it.

I also did some writing on Thursday. Not much - around two thousand words; but they are new words I've committed to a project I've tentatively called Walhalla - one that I've been trying to get going for a little while now. Again, my concentration collapsed after a few hours but, for a time their, it was really nice to just write something - to have some creativity flowing through me. I have only the vaguest idea of where this material will fit into an eventual story. That doesn't matter to me though. These things can be worked out later.

As I predicted, the pointy end of necessary human interaction is beginning to make itself felt and it is not encouraging. Of the few trips I've made to my local grocer this week, I've found them to be understanding without having to divulge the circumstances of my situation. Other places have regarded me with confusion, a latent suspicion and unabashed antipathy. One lady at the chemist the other day when I was trying to mouth the word tramadol, came right out and said, rather incredulously, "You can talk you know!"

A predictable ignorance.

The minute you hope for understanding, human nature comes in and shits all over it.

So I'm avoiding going out unless it's absolutely necessary. Soon, sadly, it is going to be necessary. I'm dreading that.

I think I'm done with pop culture. Looking through my social network feed this week, I've seen a number of spot fires raging around controversies within the Marvel and Star Wars universes and they are just so hack. Something about Captain America being a Nazi now and, shock horror, the forthcoming Rogue One film has to undergo some reshoots - like that never happens.

The pretentiousness of these hyper fans is really difficult to cope with and I feel as though there is an expectation on the part of some of them to engage in a war to justify some sort of defense of an ideology. It's fucking fiction! It's not key to human survival. Their consistent argument is that "my fandom is bigger than your fandom so your opinion has no validity!" I've encountered this personally in just the past week. It is confronting.

It's indicative to me that fandom is essentially broken and that maybe it is time to abandon certain franchises - *cough* Marvel *cough* that have already been twisted up in so many knots, the ability to ret conn them is virtually useless.

Further, I find that fans in my own beloved franchise have hitched themselves to it in sych a way that they have begun identifying themselves as "Star Wars" celebrities. That, because they flaunt their fandom as though it's some kind of penis symbol, they have assumed the right to be intertwined with the universe - almost as if they were in the fucking films themselves. It is annoying. Infuriating even.

I am trying to pay attention to the Federal Election campaign here currently because I like to think of myself as a responsible civic citizen and I want to take my vote seriously. But, I can't make sense of any of the arguments being put forward by the participating political parties. It's becoming lost in confusion and slogans. The only things the nation seems to have been talking about is the economy, superannuation, tax and jobs. Nothing about the arts. Nothing about social justice issues. Nothing about climate. We are a nation obsessed with money and the problems we face as a nation going forward require more than just money to address them.

But then I'm lost again.

Anyway, I have gone off on a major tangent. But it is illustrative of where my mind is at right now. I am unable to focus on anything for more than a short period of time before I am quickly distracted - then disinterested.

And I sit and look out the window.

There's a toilet roll tube on the top of the fence paling.

DFA.

The Wars That Saves Lives - A Look At My Saga.

By now, I'm sure most of you would be aware that it is shaping up to be huge year for Star Wars fandom. We've just seen the conclusion to season 1 of the animated series Star Wars: Rebels and we're about to embark on season 2 in the American fall. We've seen the hugely successful 4 day convention extravaganza Star Wars Celebration in California and a big Star Wars presence at the recent San Diego Comic Con. And, unless you've been living under a rock, you will know that come December, Star Wars will return to the big screen in the highly anticipated first entry in the sequel trilogy The Force Awakens. For a franchise that was considered to be done and dusted just 10 years ago after the final film in the prequel series, it is quite a momentous change in fortunes for George Lucas' genre defining franchise. 

Now, those of you who know me really well, know that I'm a massive Star Wars fan and, for me, it feels like there has been no better time to be a Star Wars fan. In the past year alone, I've been able connect with a number of like fans around the world and I've loved being able to rap over something that is so mutually loved. Central among these new connections, has been an Australian documentary film maker named Adam Harris.

(image credit: My Saga.)

Adam came onto my radar last year when he launched a Kickstarter campaign titled "My Saga" in which he sought backing for a documentary film project. The project description immediately caught my eye.

"My Saga - A Star Wars Documentary is a story that will show for one person that Star Wars not only changed their life...it saved it."

(image credit: My Saga.)

The initial campaign was wildly successful and the production has since gone from strength to strength as Adam as his small team of film makers work tirelessly to bring the documentary to fruition. 

And indeed we will see it with the announcement, earlier this year, that Adam Harris' film will be released internationally in 2016.

"My Saga follows the journey of Adam Harris, a husband, father and Star Wars fan. Four years ago, the discovery of a brain tumour and a serious health scare caused Adam to re-evaluate his priorities and follow his dreams.

Star Wars has always been a constant source of joy, comfort and even safety in Adam’s life. When it became apparent his children shared the same deep love and affection for Star Wars, Adam felt compelled to discover just what it is about Star Wars that creates such devoted fans that span across multiple generations, all around the world.

With his son Jack by his side, Adam has spoken with fans, enthusiasts, die-hards as well as cast and crew members from the films. All the while discovering what Star Wars means to him, and the impact it’s had on making him the husband and father he is today.


Every fan has their own saga. This is one."

The first teaser trailer for the film took the internet by storm when it was released onto YouTube and Adam has increasingly captured the attention of media outlets both here in Australia and overseas. Adam was featured in a number of interviews by official media covering the recent Star Wars: Celebration in California and he has received support from major Star Wars identities.

(image credit: Adam Harris.)

In the whirlwind procession of Star Wars and Star Wars related media that will be coming our way over the next 12 months, My Saga promises to be a lovingly constructed journey of one man's Star Wars fandom and will be on my own personal list of must see films in 2016. 

Connect with Adam Harris here.

Connect with My Saga here.

Tweet with My Saga here.

Visit the official site here.

DFA.